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CHfather

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CHfather last won the day on January 11

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  1. Skepticism is justified, and the price is very high, but this is still news. https://www.medscape.com/viewarticle/905929?src=WNL_infoc_190111_MSCPEDIT_TEMP2&uac=66000EX&impID=1857026&faf=1 The US Food and Drug Administration (FDA) has cleared the hand-held, noninvasive vagus nerve stimulator gammaCore (electroCore Inc) for adjunctive use in the prevention of cluster headache in adults, the company announced. The device is already approved for the treatment of episodic cluster headache and migraine in adults, as previously reported by Medscape Medical News. The gammaCore device is placed over the vagus nerve in the neck, where it releases a mild electrical stimulation to the nerve's afferent fibers, which may lead to a reduction of pain in patients. It is the first and only product approved by the FDA for the prevention of cluster headache. “The FDA clearance of gammaCore for adjunctive use for the preventive treatment of cluster headache has the potential to help the approximately 350,000 Americans impacted by this debilitating condition," Frank Amato, CEO at electroCore, said in the company's news release. According to the company, to help prevent cluster headache, adults should self-administer two gammaCore treatments daily. Each treatment consists of three consecutive 2-minute stimulations. The first treatment should be applied within 1 hour of waking up and the second at least 7 to 10 hours later. gammaCore is available by prescription only. FDA approval of the device as an adjunctive therapy for the prevention of cluster headache was based on positive safety and efficacy data from the PREVA study, as well as data from a real-world retrospective study examining the daily clinical use of gammaCore preventively and acutely for the treatment of cluster headache, the company said. In the PREVA study, patients who received standard of care plus gammaCore treatments saw a greater reduction from baseline in the number of cluster headache attacks per week than those receiving standard of care only (−5.9 vs −2.1), for a therapeutic gain of 3.9 fewer cluster attacks per week (P = .02). In addition, 40% of patients who received gammaCore treatment in addition to standard of care experienced at least a 50% reduction in weekly cluster attacks compared with 8.3% of patients who received standard of care alone (P < .001). Use of gammaCore was also associated with a 57% decrease in the frequency of abortive headache medication.
  2. My update. After suffering CH for decades, in August last year, I went to The Headache and Migraine Clinic in Brisbane--http://brisbanemigraine.com.au/  and after a three week treatment using The Watson Treatment, I was cleared of the horrible CH. Last week I had two minor attacks, and took the last of my Magic Mushroom powder capsules, and I feel ok. 

    I can't remember where I got the MM from. Does anyone know where I could get more in Australia? I think they came from Darwin, but not sure.

  3. CHfather

    Help Needed

    Yes, that is basically true. Some other "headache" conditions sometimes respond to O2, but not consistently and generally not as fully as CH does. A big note of thanks can be given to Dr. Kudrow (grandfather of the actress Lisa Kudrow, and who himself had CH), who conducted the first recognized trials of oxygen in the early 1980s, and to Dr. Goadsby and his colleagues who conducted medically persuasive (double-blind, placebo-controlled, etc.) trials in 2009.
  4. CHfather

    CBD

    There are threads here where people report results from CBD oil. Some good, some very good, and some neutral (no effect, or no discernible effect). No bad results, I don't think. You can find all references in this forum to CBD oil by typing CBD into the search bar at the upper right side of each page. I think the ~25mg that you're getting might be a little low based on people that reported good results -- but I could be remembering that wrong.
  5. CHfather

    How was your weekend?

    So sorry to read this. Hoping for better times soon. Crazy weather patterns in some places have definitely been affecting some people. Any chance that you ate something with MSG in it on Friday or over the weekend?
  6. CHfather

    Vitamin d3

    Joe, was your measurement of 67 in nmo/L (the standard European measurement) or in ng/ml (standard Us measurement)? I ask because 67 is surprisingly high in US measurement if you haven't been doing some serious supplementation or spending a whole lot of time in the sun, but it's in the relatively low (but "normal") range in Europe. In the nmo/L measurement, you'd want to be above 200 (80/85 is the ng/ml measurement).
  7. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    Ginger is considered very good for shadows. A strong tea made from sliced raw ginger is good. You can buy commercial ginger teas (if you're careful that you're getting real ginger), use ginger beer (non-alcoholic), or chew on ginger candies (again -- real ginger). Ginger People is a company that makes strong ginger candies. Some people have found that energy shots also help with shadows. I'd have that coffee ready in advance, and I'd seriously consider the energy shots as an alternative. Small as they are, there's more caffeine in them than what you're brewing, and you can get then down real fast. Something I have wondered about but have no definitive position on -- I would think that two Benadryl at night might induce a pretty deep sleep, leading perhaps to not awakening until an attack is farther underway than it would be if you hadn't taken the Benadryl.
  8. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    JJ', Without oxygen and without the other standard pharmaceutical abortives (triptans, usually injectable but sometimes the nasal spray works), you might try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. (Since you're getting hit during the night, you probably are waking up with them, so "first sign of an attack" in this case just means ASAP.) That reduces the severity of attacks for most people, and sometimes aborts them. Many people think that the colder the energy shot is, the better. For some people, particularly in their early stages of CH, a strong cup of coffee will work. Caffeine is the most important element, but some people think that other elements in energy shots/drinks, such as taurine, also help. You can also try drinking ice water through a straw aimed at the side of the roof of your mouth where the CH is; the objective here is to create "brain freeze." Standing in a bathtub of water that is as hot as you can stand might help. You can also forcefully inhale and exhale very cold air, from an air conditioning vent or just outside if it's very cold. Some people find that very vigorous exercise helps, particularly vigorous exercise in cold outside air. Some people say that CBD oil has been an effective abortive for them, and apparently DMT is, too, for some people (two entirely different things, which I put together just because of the initializations and because I think they are cannabis derivatives). Since we're covering all the bases, I'll add that a few people have said that vigorous sexual activity, including masturbation, will stop their attacks. Those suggestions are presented in roughly descending order of possible effectiveness (in my view). Benadryl helps a lot of people as a preventive. 25mg three times a day and 50mg at bedtime. Or what you can tolerate. It will make you groggy. Do not delay about getting oxygen. A standard prescription might read something like "Oxygen therapy for cluster headache. 15-25 minutes at 15 liters per minute with non-rebreather mask." (Docs use some abbreviations in there.) Let us know when you have the prescription. Usually a doc will fax it to a provider. Sounds like you might request Apria as the provider. You might check possible triggers in the file of that name in the ClusterBuster Files section. Start on a loading dose of D3 ASAP, along with the other supplements. Most people do not think that chiropractic or other bodywork helps. Some people find that it does help them, so ask around among your peers. Acupuncture has been effective for some people. It is said that there is a medication coming to the market fairly soon that might be an effective CH preventive. If there's any way that you can count yourself as "lucky," it's in having received a fast diagnosis. The average time to a correct diagnosis is 3-5 years, during which time many people continue suffering as well as having unnecessary surgeries, tooth extractions, and many other useless treatments, or are treated as though they are crazy.
  9. CHfather

    CCH surgery

    https://www.docguide.com/vidian-neurectomy-management-chronic-cluster-headache?tsid=5 Vidian Neurectomy for Management of Chronic Cluster Headache; Liu S, Kao M, Huang Y, Su W; Neurosurgery (Dec 2018) Tags: Pain Management Read/Add Comments | Email This | Print This | PubMed | Get Full Text BACKGROUND Management of chronic cluster headache (CCH) remains a challenging endeavor, and the optimal surgical approach for medically refractory CCH remains controversial. OBJECTIVE To conduct a preliminary evaluation of the efficacy and safety of vidian neurectomy (VN) in patients with medically refractory CCH. METHODS Between March 2013 and December 2015, 9 CCH patients, all of whom had failed to respond to conservative therapy, underwent VN with a precise nerve cut and maximal preservation of the sphenopalatine ganglion. Data included demographic variables, cluster headache onset and duration, mean attack frequency, mean attack intensity, and pain disability index measures pre- and through 12-mo postsurgery. RESULTS Seven of the 9 cases (77.8%) showed immediate improvement. Improvement was delayed by 1 mo in 1 patient, after which the surgical effects of pain relief were maintained throughout the follow-up period. One patient (11.1%) did not improve after surgery. One year after VN, patients' mean attack frequency, mean attack intensity, and pain disability index decreased by 54.5%, 52.9%, and 56.4%, respectively. No patient experienced treatment-related side effects or complications. CONCLUSION VN is an effective treatment method for CCH patients. Precise Vidian nerve identification and maximal preservation of the sphenopalatine ganglion may achieve good surgical outcomes and dramatically improve quality of life among patients, without significant adverse events.
  10. CHfather

    Oxygen arrived

    How is it working?
  11. CHfather

    Has melatonin made CH worse for anyone?

    A couple of other people have had the feeling that they got worse attacks on nights when they took melatonin. Melatonin is quite low in people during their CH cycles, and it has affects on regulating activity of the hypothalamus, so that's why it is recommended, and probably why for some people it works very well.
  12. CHfather

    Zolmitriptan spray - how fast does it work?

    missing . . . To repeat Jon's question: Do you have oxygen??
  13. CHfather

    My Face Hurts

    THMH, I agree that there are a lot of qualifiers in the article related to CH. And I'm not sure how they concluded that some people who were diagnosed with hemicranias had actually had CH. Guess I'd have to read some of the other articles they mention. Interestingly, here's the title of an article from 2010 that I found while looking for others: "The prevalence of headache may be related with the latitude: a possible role of Vitamin D insufficiency?"
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